Chronic fatigue and post-exertional malaise in people living with long COVID

Abstract

Purpose: People living with long COVID describe a high symptom burden, and a more detailed assessment of chronic fatigue and post-exertional malaise (PEM) may inform the development of rehabilitation recommendations. The aims of this study were to use validated questionnaires to measure the severity of fatigue and compare this with normative data and thresholds for clinical relevance in other diseases; measure and describe the impact of PEM; and describe symptoms of dysfunctional breathing, self-reported physical activity/sitting time, and health-related quality of life. Methods: This was an observational study involving an online survey for adults living with long COVID (data collection from February-April, 2021) following a confirmed or suspected SARS-CoV-2 infection. Questionnaires included the Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT-F) and DePaul Symptom Questionnaire-Post-Exertional Malaise. Results: After data cleaning, n=213 participants were included in the analysis. Participants primarily identified as women (85.5%), aged 40-59 (78.4%), who had been experiencing long COVID symptoms for ≥6 months (72.3%). The total FACIT-F score was 18±10 (where the score can range from 0-52, and a lower score indicates more severe fatigue), and 71.4% were experiencing chronic fatigue. Post-exertional symptom exacerbation affected most participants, and 58.7% met the scoring thresholds used in people living with myalgic encephalomyelitis/chronic fatigue syndrome. PEM occurred alongside a reduced capacity to work, be physically active, and function both physically and socially. Conclusion: Long COVID is characterized by chronic fatigue that is clinically relevant and is at least as severe as fatigue in several other clinical conditions, including cancer. PEM appears to be a common and significant challenge for the majority of this patient group. Patients, researchers, and allied health professionals are seeking information on safe rehabilitation for people living with long COVID, particularly regarding exercise. Fatigue and post-exertional symptom exacerbation must be monitored and reported in studies involving interventions for people with long COVID.

“I feel like my body is broken”: Exploring the experiences of people living with long COVID

“…The purpose of this sub-study was to better understand and explore individuals’ experiences with long COVID and commonly reported symptoms using qualitative data collected from open-ended survey items contained within a larger survey [8]. Findings support and extend prior research and underscore the complex, highly variable, and distressing nature of long COVID across a large number of participants from predominantly developed countries.…”

“…The qualitative data collected, analyzed, and reported herein were collected as part of a larger observational study using an online survey [8], which was approved by the University of Calgary Conjoint Health Research Ethics Board (REB21-0159). Initially, the qualitative data were collected to enable participants to qualify or elaborate on their closed-ended responses, with planned content analysis if data were sufficient.…”

“…The larger online survey consisted of a socio-demographic and medical questionnaire, five closed-ended questionnaires assessing fatigue, post-exertional malaise, health-related quality of life, breathing discomfort, and physical activity (described and presented elsewhere [8]), and seven open-ended items. The seven open-ended items, which are the focus of this manuscript, were presented after each of the five closed-ended questionnaires, or block of questions, via stems such as “ Please use this space for any other comments about your experience with symptoms that continued or developed after acute COVID-19, or the support you have received for long COVID.…”

Post-Covid-19 Syndrome: Improvements in Health-Related Quality of Life Following Psychology-Led Interdisciplinary Virtual Rehabilitation

“…This analysis revealed a significant overlap in 25 out of 29 symptoms with the three major ME/CFS symptoms (fatigue, reduced daily activity, and post-exertional malaise) widely reported in the post-COVID-19 syndrome literature. Additionally, Twomey et al 9 found the most prominent symptoms of post-COVID-19 syndrome were chronic fatigue and post-exertional malaise, with 71.4% of participants reporting chronic fatigue and 58.7% meeting the diagnostic criteria for ME/CFS. In response to the growing demand for effective rehabilitation for the long-term effects of COVID-19, the ME Association published guidelines to support recovery from post-viral fatigue syndrome following COVID-19 infection.…”

“… 8 These persistent symptoms have a significant impact on individuals, that exhibit reduced quality of life, alongside reduced capacity to work, and perform usual daily activities. 9 Indeed, Davis et al 10 found that only 27.3% of participants with current post-COVID-19 syndrome symptoms had resumed their usual working hours, with 45.6% working reduced hours and 23.3% not working as a direct result of their symptoms. Together, these findings suggest post-COVID-19 syndrome has a range of individual, social, and economic impacts, therefore underscoring the need to develop effective treatment options.…”